There are many things I never thought I’d say, and living with IBD has given me the opportunity to say many of them. I surprise myself at times.

Since having my latest op, I am dealing with a most peculiar wound. I now have, what is commonly known amongst people who’ve had this done, as a Barbie Butt. During surgery, the doctors removed EVERYTHING from ‘down there’, I have no colon, no rectum and no anus. My ass is like Barbie’s… as in no holes, it is not quite so pretty though!

A few years ago, I would have never in a million years told the world this, I would have been mortified. I would have felt embarrassed and sad and humiliated at the thought of other people knowing this. What if that laughed at me? What if they talked behind my back? What if they thought I was gross?

These days, thanks to this blog, I share everything. I know that I am not alone and that there are so many people going through the same things as me. I know there a millions of people living with all manner of illnesses and disabilities that society would deem embarrassing and so I think fuck it! If me talking about taboo subjects and things that are giggle-worthy helps just one person, then I will happily blab about my life.

So anyway, this Barbie Butt…

Well, I literally no longer have a bum hole, it is sewn up completely, but bum holes don’t really like being sewn up completely, it confuses the hell out of the brain and body and so it can often be difficult to heal. It is really quite sore, it’s not very nice to sit flat on my bum, it is painful, itchy and like any wound, takes time to settle down.

I think I am quite lucky at the minute, because apart from the soreness, I have had no issues. I know some people have an awful time and need drains, have abcesses, stitches opening and all manner of nasty problems. My stitches are all dissolvable and the worst part has been having the district nurse look at my bum twice a week. Some people have stitches that need to be removed, some have staples or even have the wound left open to heal from the inside out. I can obviously only talk about my experience.

It is quite intriguing though, it is one of the first things that family or friends have asked about since the op, with one (very weird) friend asking to have a look. It is a bit of an oddity isn’t it! I did have to get a mirror and have a peek once I got home!

I have been scouring the internet for ways to relieve the pain and discomfort of the barbie butt and then got an email from a reader in Australia called Amanda who has had the same surgery as me. She recommended salt baths and then using a hairdryer to dry the area…

I had to try it and I have to say, it seemed to work quite well, which is how I have ended up here writing about giving my arse a blow-dry!

I thought I would share some tips on relieving symptoms in the recovery of Barbie Butt:

Using a donut cushion or an inflatable cushion. Some people say not to use a donut as it puts more pressure on the area, but I found it really helped.

Sleeping on your side, if possible

Keep it clean. Shower, bathe, bidet, whatever works best for you. Avoid soaps and scented products.

Salt baths

Using a hairdryer (on cool and low!) to dry the whole area. You’re not going to want to be drying it with a towel and it needs to dry.

Getting some air to it! Going without pants/pyjamas at night (if possible) so the wound isn’t constantly covered and sweaty!

Speak to your nurse or doctor if you are worried about anything.

Take painkillers, keep on top of your pain levels

Give yourself a break. You have had major surgery and need to give your body plenty of time to recover.

As always, I have no medical training, these ideas are what I have tried or what others have suggested. Do speak to a professional if you are at all worried about anything to do with your wound.

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total! The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously. I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!

The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure. I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube. I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.

Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely. They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant. So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin. This is painful and when I stand, it feels like everything is going to fall out! The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week. Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick. The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak. The leaks are soul destroying. There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it. I’m not.

I don’t feel ready. I change my bag but I hate seeing it, looking at it, touching it. I wish I could ignore it completely. I know this isn’t my usual happy and positive stance but it’s important that I’m honest. And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag. I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life. You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all. I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

So I am home and recovering. I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal. It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family. Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days. They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic. I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op. We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles. We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me. Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing. I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable. It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to. We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off. During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!

Sam xxx

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I just had a call from the hospital and they’ve had a cancellation! I’m going in tomorrow morning for my op! I am having my jpouch removed, my butt sewn up and a permanent ileostomy formed.

I am a bit in shock, it is all very real now. I mean, I knew it was coming but this is it, the final day of my life without an ostomy.

I’m scared, upset and bewildered but life at the minute is crap, I am so ill, I go to the toilet 20 times a day and have accidents, so it has got to be better than this!

I will ask Timm to update when he can, if you don’t already, you can follow me on Facebook and twitter where I am more likely to be (though the internet/phone connection in the hospital is shit!)

It’s a big operation and recovery takes a while, but I will try and blog whenever I can. I just hope this is the start of a new, happier and healthier life for me. I’m a bit in shock and need to go pack my bags and get myself ready, so I’d better get off now as I think I am waffling.

Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic. I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before.

I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness.

Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful.

I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time. I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather.

My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself. Between this and years of meds that batter you down, I literally catch every single bug going. This means I’ve had a cold and cough since October.

There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep. I take anything from 4-16 immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy.

There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it. The never ending treatment and the feeling this could be for the rest of my life is soul destroying. Times when I can’t find a silver lining and wish I could just be normal.

Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world.

When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants. It takes a mental strength to just get out of bed. I pack supplies of meds, wipes, bags and spare underwear.

So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this.

Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house?

No? Well, please have patience with me.
Sam X

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2015 was a crazy year for me with mega highs and terrible lows, I wrote 116 posts on this blog with over 2 million views, here’s a look back at my So Bad Ass year.

January

I started the year by giving up the razor, which I led me down a hairy path of self awareness and body love. I travelled around the country doing talks for Pelican Healthcare, Sunday Assembly London and Crohns and Colitis UK talking about confidence, invisible disability and overcoming tough times. I got mad about the show Too Ugly For Love, talked periods and got another hernia named Harry.

This led me to start the More Than Meets The Eye campaign to raise awareness of invisible disabilities. I worked with Scope to push the message that we aren’t alone and get people talking about the life of people whose illnesses or disabilities can’t always be easily seen but affect many parts of their lives. It was a brilliant campaign that I am very proud of.

I went on a girls holiday to Magaluf in April, it felt like a real breakthrough in my recovery, that I was able to go on a wild jaunt with great friends and not have my illness get (too much) in the way.

I also started working as a contributing writer for the Metro, this was a massive thing for me, I have always wanted to be a writer and between getting my agent and starting to work for the Metro, I really felt like I was getting there!

I was struggling with the effects of Pouchitis and fatigue and not having a great time mentally and emotionally and so wrote about Going Dark and avoiding family and friends.

July

July was Tramlines, Sheffield’s inner city music festival, my husband is the production director for them and so July is a crazy busy month for us as a family. I was also out working for art group Responsible Fishing UK and worked away for most of the month. I did a couple more talks for Pelican Healthcare too.

August

August was Music in the Gardens time, where Crohns and Colitis UK were invited along to be their chosen charity, as a volunteer for the South Yorkshire group I went along with Timm and Charlie to shake buckets and raise money! We raised £2800 for the charity and couldn’t be prouder!

I was invited down to Parliament in November by Crohns and Colitis UK to talk to MPs and peers about life with IBD, it was such an honour and a really proud moment. I also took part in the Scope End The Awkward campaign, in their A-Z of sex and disability, I was their I for Intimacy and did a few newspaper, radio and TV interviews about the brilliant project.

So there it is, that is my year in (not so) brief… It certainly has bee a roller coaster, the ups and downs have been tough but I came through it pretty much unscathed.

Thank you to every one who reads and supports my blog, your messages and audience means so much, it genuinely feels like an honour to share my journey with you and I can’t thank you all enough.

Thanks for sharing my 2015 with me, I am awaiting my next surgery which is a BIGGIE and I am terrified/relieved/angry/over the moon… Basically a whole bunch of mixed emotions, I will share them all with you as I go. So please stay with me, keep reading, keep sharing, keep getting in touch.

In 2015, I decided to stop dieting. I’d been on a diet for 10 years. 10 YEARS!!!! And it was the shittest diet ever because year on year, I started January heavier than the year before.

I went through cycles of starving and binging, salad obsessions and chocolate gorging. I’d lose weight, lose interest and gain the weight back along with a few more pounds.

Well last year, I decided my poor old body had had just about enough. I’d had 3 surgeries in 18 months, a Stoma, a Jpouch, 2 hernias and a lot of meds and treatment. I decided that it was pretty wonderful that I was even still standing and so I should give it a break from messing with food.

Diets don’t work. You follow the rules and lose weight, but any short term food deprivation only leads to temporary weight loss. If you loosen the reins and return back to your former ways, you will gain it all back.

I started thinking about why I was dieting. Did I want to be thinner, or was it just what is expected of me as a woman? The more I thought about it, the more I realised that I’m actually very happy in my skin. I like my big body, I think I’m soft and beautiful and hella sexy.

But we aren’t meant to say that are we? Especially not if we are ‘plus size’. We’re meant to be ashamed and apologetic. We’re meant to strive to be ‘better’. But what if ‘better’ has fuck all to do with the number in the back of your dress? What if ‘better’ isn’t about being a size 6?

Humans are all different sizes and shapes, yet we strive to be like a very narrow, Western ideal of beauty that comes from fashion and media. It comes from air brushing, the use of very young models, the use of extremely thin models. The pressure on women to conform is HUGE. To look more like a tiny percentage of women. Isn’t that silly?

The funny thing is that my lack of dieting last year, means I start this year lighter than I was at the start of 2015. It’s the first year that my weight hasn’t gone up and I truly believe this is because I took the pressure off myself, I refused to diet but that doesn’t mean that I decided to eat everything in sight!

When I diet, I am constantly thinking about food. I think about calories and my next meal, I dream of food and look longingly at cheese boards. This year my focus was on other things, I don’t want to waste time thinking about food when there is a whole world of awesome to be thinking about! My lack of dieting made me more in touch with my body, eating when I’m hungry and stopping when I’m full. Never denying myself of food but enjoying it and savouring it.

I’m learning all the time to love my body. It’s not easy, I do cave in sometimes and see photos of myself where I’m surprised by my size. But that’s usually because I’m viewing myself through someone else’s eyes. My confidence is dented when I think that someone else is looking at me and thinking about my shape. In my head, I am Beyoncé. And Zooey Dechanelle. And Thandie Newton. And Superwoman. And Marilyn Monroe.

I’m a bad ass version of all those women blended into one shit hot mega babe.

And so it surprises me sometimes when I see a fat, 34 year old mum in gardening gear.

But you know, I do love my body. Are there things I would change? Yes. Do I want to be healthier? Yes. Will I diet ever again? No fucking way!

Healthy eating and exercise are wonderful, I think we should all eat delicious, unprocessed, bright, colourful, mouth watering food. I think we should all move our bodies and take part in exercise that is fun and makes us happy.

We only have this one body and so it is really important that we take care of it by giving it the fuel it needs and working our muscles to keep us mobile. Our physical health is vital.

But so is our emotional health, so take a moment and think about making your mind and spirit healthy too. Acceptance and self love. Celebrating not demonising. Give yourself the affirmation that you are beautiful. Because beauty isn’t about looking the same as a 14 year old size 0 fashion model, it’s about your unique and bloody brilliant self. It’s about kindness and humour and confidence and love whether you’re a size 0 or a size 32+!!

This new year, you will be bombarded by adverts telling you that you aren’t enough. That you need to buy their products to change yourself to fit in.

Fuck fitting in.

If you want to make a healthy change to your lifestyle, then go for it! But think about the long term lifestyle changes you might want to make, be aware that short term diets DONT WORK LONGTERM. Find a physical activity that you want to do, do it with friends, make it fun, enjoy it!

If you don’t want to diet, don’t be led to believe that you must. Enjoy your body, celebrate your brilliance and love yourself.